Parents give dying son, 4, blue mohawk as part of bucket list

Cole Rapini suffering from undiagnosed disease

Cole Rapini, 4, has crossed another item off of his bucket list: Getting a blue mohawk.

He was born with an undiagnosed medical condition that’s caused severe developmental delays. Now, doctors have told Cole’s parents he will live for only a couple more years -- as the grey matter of his brain begins to deteriorate.

Rather than focus on the negative, Cole’s parents, Hanna and Chris, have decided to fill Cole’s life with positive events – all surrounding an 81-item bucket list.

“When we made the list we tried to think of things that would be fun at any age,” Hanna said. “What four year old do you know that wouldn't think a blue mohawk wasn't cool?”

It was like a Saturday afternoon at the hair salon at the Rapini household on Tuesday morning. First the bleach, then a foil and some color.

Hair dresser Maria Hammerschmidt, who is originally from Vermont and now lives in Kansas City, said when she heard about Cole’s wish to go punk rock, she had to help.

“I'm just glad that I was able to bring something to the table to kind of help out in a way,” Hammerschmidt said.

“Just to see Cole smile, it brightens up the room and it brightens up everybody,” Hanna said.

It’s an infectious smile that’s spreading across the nation. Nearly 10,000 people are now following Cole’s Bucket List on Facebook.

This weekend, Cole rode in a race car, ate ice cream for breakfast and wore a mustache for a day.

Cole’s list isn’t just about blue mohawks and ice cream. It’s also about getting legislation passed so undiagnosed medical cases can be linked to potential solutions.

The bill, H.R. 2671, is sitting in the House. It's named after another child who suffered from an undiagnosed disease who later died.

“It would in a sense require the U.S. to keep a database of all undiagnosed cases in the country,” Hanna said.

That database would allow doctors to input symptoms and treatments to find common links among patients.

For now, Cole continues to have the best time of his life.

“We have a few years to try to make up for things we haven't been able to do in the last 4 years, because any vacation time we've spent has been in hospitals all over the country,” Hanna said.

One thing the Rapinis know, a November vacation won’t be at a hospital, but at Disney World. Cole also has plans to meet a celebrity, fly in a helicopter and see The Blue Man Group.